(gentle music) - [Narrator] Move to Include, it's a public media initiative to promote awareness and inclusion of people with disabilities, with special programs, advanced social media, and online resources, Move to Include challenges the community to learn more about the abilities of people with disabilities.

For more information, visit us online at movetoinclude.us.

- Good evening, everybody.

Welcome.

Good evening.

Welcome to a local perspective on disabilities and aging, and part of the national Move to Include.

I think I've met most of you, but I'm Kitty Lensman and I'm the president and CEO of Think TV here in Dayton and CET in Cincinnati.

And here we are live.

So we are taping this, we're gonna have some interaction with people watching the stream, and it's really, a really very cool event.

Tonight's program is made possible thanks to the generous support and our partnership with the Charles D. Berry Foundation.

Yay!

(audience applauds) So I have to say I've known Chuck Berry for a very long time, almost 30 years, Chuck, we met when we were 10.

But you know, Chuck has supported public media for more than four decades.

He is a true partner to us and also generous to many Dayton area nonprofits.

I'm sure many of you also receive support that facilitate positive change throughout our community.

So Chuck is here tonight.

Please join me in thanking Chuck and the Charles D. Berry Foundation.

Thank you, Chuck.

(audience applauds) And he's also very modest.

So right now I'd like to introduce a friend and colleague that I work with here at Think TV, Mr. Greg Shell.

Greg?

(audience applauding) - Thank you, everyone.

Think TV understands that inclusion is not like a light switch that simply gets turned on or off.

In fact, it's more like a dimmer switch that you push forward into the light, with intentionality and focus.

We know that inclusion is a journey, not a simple checklist.

And that's why it's important to us to be a part of the conversation, to communicate that all people, including people with disabilities, have value and are respected and are welcomed as an important part of our society.

My name's Greg Shell, and I'm proud to be a part of the Think TV PBS team.

About two years ago, our station introduced Move to Include across the State of Ohio through funding from Boundless.

We collaborated with other Ohio PBS stations, and together we are using the power of public media to promote inclusion.

As noted in the video that we just saw, the Move to Include initiative spotlights people of differing abilities and focuses on important issues to individuals with disabilities, their families, and the communities they live in.

It dives deep into important topics like education and healthcare, housing, recreation, and employment, just to name a few.

Through the statewide and national initiative, we are working to inspire and motivate the entire community to embrace people of all different abilities in all aspects of community life.

So we thank you for being here tonight.

We thank you for lending your voice, and we thank you for being part of this incredibly important conversation.

Now, I'd like to introduce our host for the evening.

Please help me welcome Dennis Grant, CEO of United Rehabilitation Services.

(audience applauding) - Thank you, Greg, and thank you, Kitty.

You know, public television is such a great vehicle for us to reach out to the community and what a great opportunity that they've taken to promote the Move to Include project, because this is something that's gone statewide and I hope it gets even bigger.

The fact that they are doing that and inviting us here tonight to really celebrate people with disabilities, but also assess some of the challenges that they face every day is really incredible.

I don't think that a lot of us even think about the fact that, you know, as we all have better medical care, that we've had an opportunity to benefit from those things, we're all living a lot longer.

I know, I feel like I've lived a lot longer than I ever thought I would, but you know, it's one of those things where not only are we living longer, but our children with disabilities are living a lot longer and often outliving their parents.

And what do we do with that kind of situation?

You know, we're so happy to see that public television in Rochester put together this video that we're about to see, "A Good Life," that really tells the tale of how families struggle sometimes with these decisions.

What do we do about guardianship?

What do we do about making sure that they're supported after we're gone?

How do we identify the person who's gonna take over when we're not around any more?

And how does it feel to make some of those tough decisions about where are they gonna live?

How do I feel comfortable about putting them in a residential situation?

So this really shares and tells that story and gives us an opportunity to kind of assess, you know, what are the needs in this community?

One of the things I think people don't appreciate is the fact that the cost of caring for someone, ourselves included, I know my medical costs are through the roof.

You know the older we get, the more it costs.

And for somebody with a disability who may have complex medical conditions, it's incredibly challenging to figure out how do we make sure that the care is there and how do we make sure that we adequately fund that?

So we've invited a great panel here, and I'll introduce them in a short while, but they're going to be able to provide different perspectives from a family perspective, from a services provider standpoint is my role, but from the county board's perspective, in terms of making sure we have the local funding, and representative Scott Lipps is here to talk about state funding, but you know, we also have to think about federal funding as well, because it all fits together into making it possible for people with disabilities to have a good life.

So, excuse me.

So we're gonna watch the video.

It's about 22 minutes in length.

We'll come back afterwards and we'll assemble our panel up here.

And we hope that some of you have some great questions to challenge them and challenge me.

You know, I've been working with people with disabilities for, excuse me, I forgot my water, but I've been working with people with disabilities since 1976, for a long time, and I've seen changes in the system that have been extremely positive.

But on the other hand, we still have other challenges that we face every day.

And you know, we talked, you heard Greg and Kitty talk about the fact that, you know, the Charles D. Berry Foundation is supporting this event tonight, but they also support diversity, equity, and inclusion.

And they're one of the few that recognizes that people with disabilities make up the largest minority population in this country, and yet they're never included in the conversation about inclusion.

When we talk about diversity, equity, and inclusion, this is one of the largest groups that we need to be thinking about.

So our job is to figure out how do we advocate for them and make sure that services are there for the future.

So, enjoy the video, we'll come back in just a few minutes, and I hope you enjoy this and take something really special away.

Thank you.

(upbeat music) - "A Good Life" is presented as part of Move to Include, a partnership between WXXI, Rochester, New York, and the Golisano Foundation, working in communities to promote awareness and inclusion for people with intellectual, developmental, and physical disabilities.

- My name is Kate.

- My name is Ravi.

- My son is Elliot.

- My name is John Tran.

- My name is Mache Judson.

- My brother is six and his name is Luca.

- I'm 14 years old.

- 19 years old.

- I'm 10.

- When I grow up, I wanna be a filmmaker, YouTuber.

- I wanna work with dolphins.

- I wanna be a dancer.

- I want to work with kids.

- I'm gonna be every single scientist there is.

- In 20 years, I want him to be a productive member of society.

- I'd like him to lead a happy life.

- I'd like her to have the option of choosing her future.

- I want him to be included and I want him to belong.

- You know, I just want for him what everybody wants for their kids.

- When Maddie has grown, I want her to have independence.

- I'd like him to be able to just have a typical life.

- My dreams...

I want him to have, you know, like an easygoing life.

- I want him to have friends, family.

I want him to be loved.

- I want Kate to have a really good life.

(gentle music) - Isn't that what we all want, a good life?

Isn't that what we want for those we love, for our families?

And isn't that what people with intellectual and developmental disabilities have been working so hard for and their families have been working right with them to make sure that things get better?

We've made great progress, but there's still a long, long way to go.

And it's only in recent years that we've seen the phenomenon of people with disabilities living longer and outliving their parents and caregivers.

And so we've got to think ahead.

So what is life gonna be like for people with disabilities in their 60s and 70s and 80s?

Some of these people are living hard lives already with stigma and isolation.

- My name is James Rickard.

I am 73 years young.

I was born in 1947, two months early.

I wasn't supposed to live.

Mom was not supposed to live.

Doctor said, "Take him home.

He will die anyway."

The doctor did not have a positive life for me.

I really don't know what it means, but I have Downs syndrome.

- Jim's my younger brother.

He's the last of four of the family that came right before Jim.

And he was identified with Down syndrome early on in his life.

But as I think he say, I really don't know what it is, and he doesn't, then that's the way he was raised, not knowing that he has a disability, but knowing that he has a lot of opportunities.

Mom took care of Jim, of course, for the, you know, the greatest portion of their life together until there came a point in time that she started to fail, and Jim went, fell into some of those rules of taking care of her rather than her taking care of him very quickly.

- I miss my mom and I took care of her for 24 years.

I came to the house, to the gurney, cook, take, bath her, dress her, and it was hard to see her go down.

- With the extended life expectancy, people like Jim are living longer, into their 60s, 70s, and 80s.

Part of the reason is better medical care, better support systems, the baby boomer generation.

One example of what is happening is if you look at New York State, half the people being served are over the age of 50.

- Oh, you're tearing the room apart.

- Yeah, it's a sad thing.

It was a 15, I can't remember now.

It's either 15 or 17 years you've had been with Lifespan.

- I've been here 20.

- 20?

- When Lifespan decided to close down or was forced to close down the program for the adults in the community, I was desperate.

I knew that he needed something to occupy his time.

He needed the social aspect of his life.

He needed to interact with other people.

- What's up, buddy?

- Hey, buddy.

- And that's why I was so happy when I remembered Holy Childhood.

- That there, we're good.

- There are activities there that these men and women can do that enhances their self-esteem.

- It's kind of hot so be careful.

- Okay.

- But I'll be right out front.

Just where I dropped you off.

Okay?

- Okay.

- See you later.

- And as soon as you get- - They need something to take them away from the isolation as well as the loneliness of their independence and being alone and sometimes shunned by other people in the community because of their differences.

- You name it...

So I don't think that this is because of Jim's age.

I solely think that some of this is because he's disabled.

And so we start lacking physical touch.

We start lacking human connection and so that he needs that.

And so lacking those fundings for those kind of programs really makes you and highlights how more subhuman are considered to be in society.

- People are often sitting at home doing nothing, and sitting at home can result in isolation, which could also lead to depression.

We need to make sure that we have programs that help people get the life that they want.

- My fear for the future is that I have noticed some cognitive decline in Jim.

You'll tell him something one day and he'll have forgotten it two days later, or you make a suggestion to him for, you know, this might be a better way to do this, and he may do it once and then forget about it.

If the cognitive disability continues, then he's gonna need more focused attention for the rest of his days.

- Functional decline, including cognitive decline, is something that happens to everybody.

We don't all have cognitive decline, but all of us decline in function one way or another.

And the issue is that in the world of developmental disabilities, aging to the point where you have that kind of decline is a relatively new thing.

So there isn't that much research to help us understand it.

(light music) - [Parent] What her future looks like, we don't even know because what we see adults with Down syndrome today doing, they weren't doing 40 years ago.

So what will it look like 40 years from now?

I don't know.

But I do think that it will be a rich future, where she is not just a beneficiary, but she is also a contributor, whether we are around or not.

- [Parent] My dreams and hopes for Elliot are that he leads an enviable life.

And the first time I heard that phrase that a disabled life can be an enviable life, it was a real game changer for me, because it can be.

And I want him to have an enviable life that other people can aspire to and look at and say, this is what it's all about.

- So historically speaking, people were afraid of people with disabilities' difference.

They didn't understand them.

We were just ostracized in society.

So what doctors kind of trained folks to do is to send them off to institutions, so that we didn't have to see them at every day life.

We didn't have to get used to them existing within us because they were put away in institutions and sometimes prisons.

It really just depended on where you were in the world at the time.

(ominous music) - From the 1850s through the late 1940s, people with intellectual disabilities were portrayed in uniquely negative ways: as defective, immoral, oppressing danger to the nation.

Social reformer Amos Butler and his presidential address to the National Conference on Charities and Corrections argued feeble mindedness, that was the term used at the time for people with intellectual disabilities, produces more pauperism, degeneracy and crime than any other force.

Walter Fernald, who is president of the American Association for the Study of the Feeble-Minded declared the most important point is that feeble-mindedness is highly hereditary and that each feeble minded person is a potential source of endless progeny of defect.

No feeble minded person should be allowed to marry or become a parent.

So these views are rooted in eugenics.

Eugenics was a social movement which sought to improve the quality of the human population by encouraging breeding by those who were seen as fit, upstanding citizens, while imposing institutionalization, sterilization, and other forms of social control on those deemed unfit.

Not only did Eugenicists castigate people with disabilities, but they stigmatized the entire family and lineage.

If disability was hereditary, the whole line was tainted.

So disability became a source of deep shame for families.

As people with disabilities we're increasingly seen as dangerous and defective, people tried to remove them from their communities.

Institutional populations grew, but state funding for them didn't keep pace leading to overcrowding, poor hygiene, abuse, neglect, a lack of treatment, education, even basic activities.

Despite these conditions, medical professionals recommended institutionalization as early as possible in a child's life, at birth for children with Down syndrome.

Parents were told they didn't have the skills to raise disabled children and that trying would destroy their homes.

So many parents institutionalized their children due to shame or because they believed it was the best thing for their child or because they had no other option.

So by the late 1940s, mass institutionalization, compulsory sterilization and the denial of rights had become the cornerstones of disability policy.

- [JFK] And I hope that in the 1960s, these years will be known as years in which the United States took the leadership in the great effort to make it possible, to discover what we can do to make these boys and girls life more hopeful and fruitful.

- A child born in 1970 arrived at the cusp of massive systemic change in our treatment of disability.

Fear and stigma had silenced many families, but times are changing.

The United States was experiencing a new era after World War II.

As economic and cultural norms were shifting for much of the country, the institutionalization of children with disabilities faced increasing criticism.

Access to community-based education and services grew for some children.

Facilities and schools functioning as institutions were still seen as viable options for other children with disabilities.

This was especially true for children from families without resources and from minority populations.

- There was a massive white flight into the suburbs, as with the G.I.

Bill and other forms of federal subsidies, there was a huge transfer of wealth to resettle white ethnic immigrants into the suburbs.

And so there was a siphoning off of huge amounts of resources and infrastructure, transportation, education to suburban areas.

What these institutions turned out were places that were overcrowded and understaffed.

So they became merely warehouses of children, places of disease, places of flagrant violence, sexual abuse.

So the allure of these places as being safe spaces for families to admit their children, by the 1950s and 1960s, that started to subside and America sort of understood what the reality of these places were.

(upbeat music) - [Narrator] Families of children with disabilities began organizing as never before to advocate for legislation that would provide their children with rights and access to resources.

In 1950, a group of empowered parents formed the Association for Retarded Children, now called the ARC, which would come to be a powerful voice in disability rights activism and legislation.

By the late 1960s and early 1970s, parents began using the courts to claim rights, arguing that people with disabilities should have the same rights and access as able-bodied people.

Disabled activists and parents were building a growing infrastructure of community-based services and establishing a civil rights movement for people with disabilities.

In 1973, the passage of Section 504 of the Rehabilitation Act marked a profound shift in disability public policy.

People with disabilities were seen as a legitimate minority group, subject to discrimination and deserving of basic civil rights protections.

By 1975, Congress passed the Individuals with Disabilities Education Act granting children with disabilities throughout the nation the right to a free, appropriate public education.

The Americans with Disabilities Act was signed into law on July 26th, 1990 by President George H. W. Bush.

The ADA is considered an equal opportunity law for people with disabilities and it aims to level the playing field for people of any ability.

- People with disabilities were still victims of segregation and discrimination and this was intolerable.

And today's legislation brings us closer to that day when no Americans will ever again be deprived of their basic guarantee of life, liberty, and the pursuit of happiness.

(audience applauding) - [Narrator] This progress was so important, but transitions themselves are also precarious.

- Our struggles are not over, as many people in the disability rights movement will tell you, we're still in a transitional period, that despite legislation, despite many changes, disability affects different communities in different ways.

- I always look up to my sister and my mom because I do wanna get married someday.

- So I think you talked a little bit how you'd like your life to be like Sue's or like Mom's.

Right?

- Yes.

- Do you wanna ask her about that?

- So what about our lives do you like?

Or what do you want for you that we have?

- I want to follow her footsteps, in my mom's footsteps.

- Okay.

- In general.

- Oh.

- That's sweet.

- Yeah.

So what sort of things do you wanna do?

I mean, what does that mean that you wanna follow in our footsteps?

- What kind of life is that?

- I want to have...

I want to have a relationship with my guy friend.

- Okay.

- And I'm taking that class, I think.

- Oh yeah, what class?

- I got a letter.

- Is it like about how to have healthy relationships?

- Yes.

- Oh.

- I think that's smart.

- Yeah.

One step at a time, right?

- Yes.

- For families working with adults with developmental disabilities, there's this constant tension between protection and giving a person freedom and making sure that the person that the person is safe, but also having the opportunity to make mistakes is a really problematic thing for families.

But for the individual, I want the right to make mistakes for myself and learn from those mistakes.

But I want my parents to be there to provide a backstop.

It's a real challenge.

- [Parent] I want him to be able to just have, find someone that he loves, if he finds someone he loves, have a job, just be able to have a very typical life that an normal adult would.

- [Parent] I advocate a lot for him.

And, you know, I feel that I'm his voice.

I want him to have his own voice, but I want him to know it's okay to ask others for help.

You know, we love him very much and I hope I pass that on to him and he'll be able to pass that on to others as well.

- [Parent] I want him to be able to navigate the world in a way that makes him safe.

I want him to be aware of what's going on, but not afraid to live and not afraid to take chances.

So I want him to be happy, but also safe.

- What I've learned is that I have to be in every conversation that is about me.

That I am the lead actress in my movie and everyone else is a supporting cast.

And those who can't support that, then they cannot be part of my cast.

- Right now, my own guardian right now, my parents are thinking about wanting to do that.

I'm kind of torn about what that's gonna do to me if they do go through with it, I would really wanna do more research on it before I would agree to anything like that.

- I know he's always thinking, so I know he's making choices and thoughts in his head, but we don't really talk about those hard subjects... We don't really talk about having a girlfriend or having children or... We talk some about where he wants to live 'cause we wanna make sure he's happy at home.

But we don't really say, okay, well, what happens to you after we're gone?

Or really talk about some of those really hard issues.

I think we just, well, I'll speak for myself.

I don't like to think about those things too much.

So I just will put that aside for now.

(laughs) - No one wants to think about the future.

No one wants to think about a time when we're not gonna be here on this Earth and be with the people that we love.

But the consequences for people with disabilities and the impact on their lives and the family are just so much greater.

So it's so important to take the time when you can to think about the future and to plan.

- I think a longer life is gonna be a better life if a plan is in place.

Planning can encompass a lot of different things.

Everything from legal considerations to financial planning to how to have a meaningful day-to-day.

And I think that wherever you are in your journey, my advice would always to be, to just begin.

It's never gonna be perfect.

It's about getting started.

(gentle music) - I don't know where he got the idea that he could have these big dreams, but he definitely does.

I mean, who else would come up with this Christmas show?

You know?

Without having a big dream.

- It is a huge project and it's 90% him.

I mean, there's an example where we go out and work together and we work hard at it, but he's telling me what to do.

You know, that whole project is his desire, understanding and I'm working for him.

- I have singing trees, I have arches that jump over a driveway and chase down the side of the driveway.

The best part of the show for me is seeing everybody be very happy when they come by and tell me how awesome it is.

- Yeah, I think that's what he's always working for, is to feel himself as valued and be valued by others.

I mean he really takes pride in people telling him he's done a good job.

He loves people to appreciate him for who he is.

(gentle music) (no audio) - You can applaud.

(audience applauds) Thank you.

I hope you all enjoyed that as much as I did.

We're gonna have our panel come up now and give them an opportunity to kind of share a little bit of information about their own unique perspectives.

You know, when I was told about the project and asked to be a part of it, I really felt excited about the fact that I was allowed to pick the panel, so I picked not just friends but people who truly have an appreciation for some of the issues that we just saw in that video.

You know, when we think about the challenges that families face in terms of making decisions about the direction of their children's lives, about what do we do as they age, when we think about wanting to make sure that we are in a position where we can support them, to give them the freedom of choice and instill as much liberty and independence as possible, you know, finding that balance is a real issue, and we think about the challenges of making sure that there are even adequate services for them.

So we're really happy to be able to bring these people together.

Now, I asked Dave Arnold to be here, and Dave is a brother of Raymond, and Raymond Arnold was a young man... Well, he seemed young to me because he had so much energy he just burst open.

And you know, Dave as a sibling of someone with Down syndrome, with a disability, trying to deal with the challenges of the family raising him and as the parents age truly has the kind of perspective that I wanted to be able to share on a local level that you kind of heard them talk about in the video.

So Dave, if you could just introduce kind of your background and how you came to be involved with Raymond actually living with you and some of the challenges you face.

- Thank you, Dennis.

Well, my brother was born in 1960 and if you saw the video, back then, it was a little precarious if you had someone born with Down syndrome.

At the time, it was such an air when he was born, my mom was never told at the hospital that he had Down syndrome.

It wasn't until about six weeks later when she brought him home and he wasn't quite developing the way a six week old, eight week old would that she called the doctor's office and the nurse got back on the phone and said, well, because of his condition he's going to develop slowly.

And she didn't know.

And she said, "What condition?"

"Oh, he has a Down syndrome."

And that was the first time that she found out.

Along the way, over those years, just like most parents of disabled people, they tend to be a little overprotective.

And my mom was that.

So I grew up with him.

At the time, she was told that he probably would live to be no more than 30 to 50 years old.

That was the lifespan of someone with Down syndrome back in that era.

But with better nutrition, and he lived with us...

He wasn't sent off to an institution like so many people were.

So growing up I really didn't know that my brother was really that different.

There were times where, you know, we would be a little protective of him if somebody didn't understand why he was a little slower, whatever... Years later, my mom's, as her health was starting to decline, I was aware of the fact that I would end up becoming his caregiver, his primary caregiver and his legal guardian.

And looking back, I didn't really sit down with my mom very much to ask about all the details that she had to go through.

At the time, he had been put into the county's workshop program when the county had various adult day programs, and at a certain point due to some issues, she took him out, and just as the video said, it got to the point where he was taking care of her sometimes more than she was taking care of him as her health was going down.

So about the last six months, he started to live with me as she was in and out of rehab.

And at a couple of times I had actually asked about getting legal guardianship.

Fortunately she had already gotten the guardianship through our attorneys and they were also my attorneys as well.

As much as I tried, she did not wanna turn over guardianship.

Unfortunately, I had to, the day after she died, I contacted the attorneys and we started the process.

There was a lot of paperwork involved, a lot of things I had to take care of.

And then I had to maneuver, after we got the guardianship, then I had to maneuver dealing with getting his social security, his SSI transferred over, his Medicaid and his Medicare and working with the job center.

That was a ton of paperwork right there.

And everybody speaks in acronyms, you know, SSI, SSA, ISP, waivers.

And you get to the point, after a while, I couldn't keep up with the acronyms and I was always having to tell people stop and slow down, I don't understand your language.

So eventually I was able to get his full SSI, and he was on Medicaid.

So my next step was to go on ahead and to find an adult day program for him.

I didn't want him, even though I worked from home and I worked by myself, I didn't want him around all day.

I wanted him to be more productive.

I wanted him to have an exciting life.

And I visited numerous adult day programs and I finally called United Rehabilitation Services, URS.

And I scheduled an appointment and immediately when I walked in, I liked the energy, I liked the interaction with the staff, I liked the fact that they had transportation...

There were just so many factors.

The other thing I learned along the way was that, with Dr. Gentile, who I didn't know, my county person told me, well, he was starting to act up and there were some behavioral issues and he asked, have you ever had him tested with the county psychiatrist?

And I said, I didn't know there was a county psychiatrist.

So we scheduled an appointment and Dr. Gentile, who was, I believe she is the head of the psychiatric department at Wright State University School of Medicine, we sat down and she informed me that the likelihood almost nearly 100% of Down syndrome people, if they live long enough, will develop dementia or Alzheimer's.

And he was in the early stages of dementia and Alzheimer's.

And as hard as that was to accept, I needed to know that so that I could plan for the future.

My sister and I, eventually, his behaviors got to be more difficult, I wanted to go back into the workforce and I managed to call my SSA and we started the quest to get him into a group home.

And that was a really, really tough decision.

But I knew that it was best.

I cried for two days before, I felt like I was committing him to something that I knew he didn't wanna do, but it was the best thing I could have done.

And he thrived in the group home, except he was, he shared a room with somebody, and as his dementia got a little worse, we eventually had to move him to another group home.

What I came to learn along the way is that people that work in a group home, people that work at places like URS, they are my heroes.

These people really do some incredible things with some tough situations day in and day out.

My sister and I really gave him the, I think he actually had a better life after my mom passed.

We took him on trips to Costa Rica, I took him on mission trips, he helped rebuild houses after Katrina... We did all sorts of stuff with him.

And my attitude was I didn't wanna shield him from the world, I wanted to share him with the world 'cause he was worth sharing.

So like I said, and to this day, as I was looking at the photos that have come up there, he had a smile constantly.

And I've started to tell people any more he didn't have Down syndrome, he had up syndrome.

So... (audience applauds) And I should add dementia, took the best of him a year ago on Groundhog Day, he died as a result of the complications and the ordeal dealing with dementia.

It was a tough thing to go through, but he was a gift, and I'm glad I had him for 61 years.

(audience applauds) - Thank you, Dave.

You know, and Dave has shared this story with me before and I know that the challenges of even convincing your mother to allow you to have guardianship and to take over that responsibility... And I know the one thing that David mentioned, and I don't know if you're comfortable sharing this, but, you know, as she's lying there in bed, I think in the nursing home, insisted that you swear you'd never put Raymie in a... - Yes.

We called him Raymie by the way, his name was Raymond, but we always called him Raymie.

But yeah, one day when she was in rehab at the nursing home, I remember it was a Sunday and she says, "I need to talk to you."

And she says, "Promise me you'll never put him into a group home."

And I said, "Mom, I can't make that guarantee, but what I will do is I'll make sure that whatever I do is the best thing for him, whatever his needs are."

And trust me, I know there's a lot of bad press occasionally on group homes, but I have to admit the organization that he was with, I just speak wonderful volumes of.

And it was a great group home setting.

I love the staff and there's some of the people here today and I'm very thankful that those people came into my life.

- Well, that's great.

Well, you know, Dr. Pamela Combs is here as our next panelist, not pamelist, but you know, Dr. Combs is the superintendent of Montgomery County Board of Developmental Disability Services, and it is the fifth largest county board in the State of Ohio.

And we have a very unique system here.

But the fact that she is responsible for making sure that these services are available on a local level, and just as importantly, as Dave said, not even knowing that some of those services were accessible to him, like the psychiatric services through Dr. Gentile, you know, that's a real challenge.

So Pamela, if you could say a few words, talk about how the county board operates and how do we make sure that families are aware of what all's available to them and make sure that they get access?

- Thank you, Dennis.

And it's an honor to be here tonight.

Thank you.

So Ohio is one of the few states in the country that is organized at a local level.

So here in Ohio we have 88 county boards of developmental disabilities and we're all working very hard to create that good life, that best life for those that we serve with developmental disabilities.

We do that through support of our county leadership here in Montgomery, we have three wonderful commissioners and county leadership.

We do that with local tax dollars, support from our state, Ohio Department of DD with services and dollars, and then we're able to pull in federal dollars to make these services possible.

Each county board has a superintendent like me, and as Dennis said, I'm the superintendent here in Montgomery County.

In the audience today we have Megan Manuel and she's the superintendent in Warren County.

Each county has its own superintendent and its own team working really hard at a local level to create that good life, that best life.

And we do that with our providers, with our parents, our guardians, our local leadership and community partners, just to make that best life possible.

There's lots of different services that we authorize and we participate in, like transportation, adult day service, like you mentioned, residential services, housing, employment... Employment is a very key service in the State of Ohio.

The governor signed an executive order.

So Ohio is an employment first state, which means when someone's leaving high school or transitioning to adulthood, we look at employment, how can we make employment possible?

What would that look like?

What can we offer?

What can we put together through job coaching and other resources?

And since that went into practice, since 2019, there's been a 21% increase in competitive employment for those with developmental disabilities.

So it's just fantastic.

It's a wonderful initiative.

But along with that comes a crisis for those who are aging.

So right now through Medicaid buy-in for those with disabilities, once a worker turned 65, how many people here are 65?

Anybody?

Nobody here is 65.

So once a worker turns 65, once a worker with disabilities turn 65, they have to stop working or they run the risk of losing either their insurance or part of their benefits.

And this is something that we really need to work on changing in Ohio, especially with our aging population.

And we certainly appreciate Representative Lipps and his hard work on this issue, and just partnering with us and with those throughout the State of Ohio who are working to make this change.

20 states so far have been able to remove this age restriction.

So we would like to see that happen in Ohio.

Along with employment as a challenge right now, as you know, across the country, we're facing a workforce crisis.

And that holds true for our system as well.

Probably one of the most needed positions are those wonderful caregivers, thousands of caregivers in Ohio that care for those with developmental disabilities, whether it's through adult day service, transportation, residential services... And it's a crisis to find those that will enter into that work field, go through the training, and then to retain them in employment.

And we need your help.

If you go to ddcrisisohio.org, there's a whole list of ways that you can help to support our field as we endeavor to find workers to continue and to enter the field to provide these much needed services.

And the last thing I wanted to mention, Dennis, is that with our aging population, we do have challenges for community integration.

Not only for those with developmental disabilities, but for the aging population in general.

In Montgomery County, we're very pleased of one of our local mothers who's in the audience today, Jennifer Cochran and her son Matthew, and her hard work for adult changing tables.

She's been working for years and years, and for the past I think three years, she's been partnering with us.

And through different grants and support of our commissioners, we've been able to begin installing a significant number of adult changing tables throughout Montgomery County.

So not only for those with developmental disabilities, but 3% of the population now, even those who were not born with a developmental disability do need to access an adult changing table.

So we're very proud of that initiative.

- Thank you so much.

(audience applauding) And that is a tremendous need and we hear it from families all the time who go to a restaurant or to an event, and if their loved one, whether it's a spouse or a sibling or a child needs to be changed or needs assistant personal care, they wind up out in the parking lot in the snow or the rain in the van, or they just go home.

And so making our community much more welcoming and accessible is so important and we're happy to see that our Dayton Metro Libraries are getting on board with that as well.

Very exciting.

Well, next I wanna introduce Kim Estess.

And Kim is an attorney that specializes in estate planning and elder law, in dealing with special needs trusts and guardianship issues.

And Kim has done a number of workshops at United Rehab Services on Saturday mornings, we like to invite families in to learn about it.

And so we got to know each other pretty well.

And so I made Kim get on our board of directors and she's a secretary now.

We make her be an officer too, so I get to see her more often.

- Didn't take long.

- No, it didn't.

We didn't give her much time.

But she's very knowledgeable and very engaged in the community and in this particular issue and she and her partners are absolutely incredible.

So we wanted her to be a part of this because you heard Dave talking about the challenges of dealing with how do I establish guardianship and how do I get it away from my parents so I can assume control before they pass, and planning, and how important planning is to ensure that we can secure services for the future for our loved ones.

So Kim, if you could lead please?

- Sure.

Can I get my slides?

Perfect.

So I'm a classic attorney, I've got some PowerPoint slides and I made Dennis promise to cut me off if I talk for too long 'cause this is normally an hour long presentation and they gave me five minutes.

But a couple of the highlights for you guys today.

When a new family comes into my office, the first issue that we're looking at when we're planning for somebody with special needs, the crux of the issue is really what is in the best interest of this person that we're trying to protect?

And there's a couple of different factors, a lot of different factors, and it's gonna vary from family to family.

But you can see on my slide a few of the highlights, right?

What's gonna keep this person safe?

And that's gonna look different to everyone.

What's in their best well-being?

And that's a lot of different things.

It's gonna mean happiness and peace of mind, just as much as it's gonna mean their physical and mental health, right?

And then we wanna look at their independence.

We never wanna prematurely take away someone's independence if we don't have to.

And so that kind of goes to my next slide too.

The next major issue is we've talked a lot about guardianships, but sometimes that's not necessary.

There are some less severe disabilities when people sometimes are able to start with putting a power of attorney in place rather than going directly to a guardianship.

And I have a lot of those conversations with people when they have young adult children that are turning 18, and they're coming into my office saying, what do I do next?

And for some people it's really cut and dry, right?

We know that guardianship is the path that we're heading towards, but that's not always the case.

And so I see lots of situations where we need to have a conversation about whether or not a power of attorney might be an appropriate starting point.

And then sometimes it's a matter of trial and error.

Maybe we're gonna try the power of attorney, but then we realize this isn't working, we need to take that next step into guardianship.

And sometimes it goes the other direction.

We start with a guardianship, with the understanding that you know, this child is still 18 and maybe by the time they get to 25 or 26 things will be a little bit different and we'll go to the power of attorney at that point.

And the court isn't against that.

Guardianship in these types of situations is not an adversarial proceeding.

It's the court being on the same team as you and your family.

We're all looking out, again, for the best interest of that person with the disability.

So sometimes we go into the courtroom and say, you know, Your Honor, we're here about guardianship today, but this might not be a forever guardianship.

And they're very willing to come back and revisit that when it's appropriate.

So that's a hot button issue sometimes that we need to address.

If we do decide to go the power of attorney route.

We're looking at both financial and healthcare power of attorney.

So we're able to help with medical decision making as well as handling finances.

And then if we don't go that route, if we're looking at a guardianship, the same components fall under that guardianship.

We're looking at guardianship over the person, which is giving you the ability to make those day-to-day living decisions, placement options for where they're gonna live, medical decisions, dealing with the doctors, and then if the person has a financial estate, and oftentimes they don't, in the developmental disability world, sometimes it's just social security, so we don't even need that guardianship of the estate.

But if the person did have money, resources, things like that, we look to the guardianship of the estate as well.

The guardianship process is just a high level overview of this, but the first thing we have to do is decide what type of guardianship is necessary.

So is it going to be just that medical daily living decision making piece, the guardianship of the person only?

Or are we going for that full-blown guardianship where we're looking at the guardianship of the estate too?

And then what documents are going to be required is going to depend, partially from county to county.

As Pamela said, we've got 88 counties, we've got 88 different ways of doing probate too.

So it's always interesting.

But every court has their own local rules, they have their own idiosyncrasies, but it's gonna look something like getting an application put in place, doing a background check of the applicant.

In many counties, even if it's your child, you still are subject to some education that you have to do guardian's training.

So unfortunately there are a lot of hoops you have to jump through to be a guardian.

But, at the end of the day, like I said, this is not an adversarial thing.

We all are really all on the same team.

Everyone's looking out for the best interests of that person that we're trying to protect.

So oftentimes people will try to go it alone to get guardianship, but a lot of times they find themselves in my office too because they're kind of overwhelmed by the process.

And because those courts do have their own idiosyncrasies and different rules, and sometimes these families are just so overwhelmed, they wanna have that help.

They want somebody to say, you tell me what to do and I'll just sign here on the line.

And to Dave's point too, sometimes they need somebody to be involved to kind of lead the conversation, why guardianship is necessary, why it's time to transition guardianship from one person to another... All of those different kinds of conversations.

Sometimes having an attorney to mediate that can really, really help.

So the process, after we file an application for guardianship, we go for a hearing in front of the judge or the magistrate, if we're in Montgomery County.

It's a conversation mostly.

Typically there's not any fighting going on unless we've got competing applications for guardianship or something like that.

But what we're there trying to establish is just that what this application is doing is in the best interest of the prospective ward.

We have the appropriate person applying for guardianship and that the ward is in fact incompetent, that there is a need for this guardianship.

We support that with a statement from a physician that just goes through the diagnoses and the various reasons why the guardianship is necessary.

So all of that happens at a hearing.

It's usually 10, 15 minutes long, just kind of a conversation.

Nothing super intimidating or overwhelming, but a lot of times people, again, feel good to have that attorney present in the room just to kind of make that a little bit easier.

The person with the disability is welcome to come to the hearing.

Sometimes they like to go, I've had lots of fun cases where the person gets to go up and bang the gavel and they think that's a lot of fun being in the courtroom and having that experience.

But it's not necessary.

It's not required.

And then I already mentioned the guardian's education.

So the other component, main component of planning is the special needs trust planning piece of things.

So once you've got your guardianship, you've got your power of attorney, you've got whatever appropriate tool is in place, you gotta think about the financial piece of things too and how you're providing for your loved one financially when you're not here to do it any more.

And there are so many different options I can't possibly cover in five minutes.

I've got a slide up here, just kind of going through some of the different ones.

But the types of special needs trust first and foremost vary depending on where the money came from.

If it's an inheritance that already came directly to the individual, or if it's money from a lawsuit or some sort of settlement like that, it's their money already.

That's called a first party special needs trust.

And the rules are different.

There's Medicaid payback at the end of the day for something like that.

But if it's something that you're planning for in advance, you are setting up a trust for your special needs loved one that they're going to receive the money in later, that's called a third party special needs trust.

And Medicaid doesn't get a cut at that at the end of the day.

So that's a huge reason why planning can be so important, because you can then direct, I want this money to go to my other children or to another, you know, loved one after my loved one with special needs passes away.

You can have so much more control when you plan proactively.

And the laws have gotten so much better.

This is a situation where we don't have to just disinherit somebody like they used to think, you know, historically, oh, you have somebody with a special needs, you gotta cut 'em off and leave everything to their siblings and hope they'll take care of them.

That is not the case.

The rules have really improved here.

There are also things called pooled trust, which are great opportunities if you wanna have a nonprofit organizing something and running it for you rather than having a trust that you set up through an attorney.

Stable accounts are great tools as well.

So these are all things that I could talk forever about, but just resources that are available.

And then lastly, you know, you've gotta think about your plan.

You've gotta think about the things that Dave was talking about.

What happens when you're not here any more?

I loved what the lady in the video said about, you know, people are overwhelmed, they don't wanna think about these things.

Just take the first step.

Just start.

It doesn't have to be perfect, but put something in place, because it's certainly better than nothing and these things aren't gonna be carved in stone.

If you still are here and competent and living, you can change it in five years or 10 years or whatever the case may be.

But have a plan in place that covers guardianship, that covers these special needs trusts, and make sure you have appropriate insurance and financial pieces of this all in place too.

- Great, thank you, Kim.

(audience applauds) I'm pretty impressed because that's more than an hour in 10.

(people laughing) Good job.

Well, you know, Representative Scott Lipps has become a great friend, not just to me, but to anybody in this state who has a disability or has a family member or a friend, or just cares about people with disabilities.

He is the greatest advocate for that population in Ohio.

And I've never been to a political fundraiser where he actually had one of the speakers, someone with a disability got up and spoke after he did.

You don't see that anywhere.

Now, we have a system in Ohio that allows the state to help fund a lot of these services.

A lot of that's funded through levies in the county level, but we have a biennium budget that's gonna be up for a vote in the very near future, and we hope that, you know, certainly there's an opportunity for people with disabilities to get a larger piece of that.

But the challenges are great.

We're very fortunate.

This is Representative Lipps' fourth term.

He was previously a councilman and also mayor of the City of Franklin.

So he is a 55th district and he does an amazing job.

We're very fortunate to have him in our corner.

So, Scott?

- Thank you.

Thank you, Dennis.

Thank you for having me.

This is a personal subject to me.

It's an emotional subject to me.

That's the third time I've watched the video and it's the third time I cried.

So sadly, my presentation isn't emotional because it's about a different subject tonight than everyone got to share.

On the video we heard several names, Robbie, Luca, Kate, and we thought of the names in our lives, in my life, Rick, Shannon, Kevin.

We heard goals and wishes such as a productive member of society, independence, and to have a good life.

We've heard from experts tonight who've dedicated their career and their lives to the IDD world.

We all agree that everyone deserves to chase their dreams and everyone deserves to belong.

But can we agree on the funding?

We have to talk about money.

Just how much money do we need?

Where do we get the money?

Who is responsible?

Families?

Taxpayers, cities, counties, the state, state agencies?

Ohio is a unique state when it comes to funding citizens that live with IDD.

Ohio provides for two funded, dedicated state agencies, silos, if you will, that serve the IDD space, the Department of Developmental Disabilities, DoDD, with an annual budget of $4 billion, and Opportunities for Ohioans with Disabilities, OOD, with an annual budget of approximately $300 million.

Ohio is one of the only states to fund free standing departments dedicated to our space.

Most other states simply fund IDD through packaged inside state programs, less visible.

Even with two dedicated IDD silos, Ohio provides additional money and services that carry through to our space.

It's through agencies such as Jobs and Family Services, Department of Education, Medicaid, and Health.

For example, the Children with Medical Handicaps program, which is sitting inside the Department of Health.

Ohio has an extensive group of county boards, the OACB.

The county boards were formed by the state legislature back in 1984, and today serve over 100,000 Ohioans.

Our county boards provide a vast array of services.

All 88 county boards have a levy to assist with funding.

But it's important to note that those levies do not operate in the same manner.

Some cross county borders, some county cross agency borders, some are small and some are large.

This review of Ohio's IDD funding model is intended to demonstrate that Ohio understands what all of you know, everyone belongs.

It is our responsibility to educate our elected leaders on how to invest in our IDD community.

Every dollar added to our state budget does more than achieve financial stability.

It improves the quality of life and it is the right thing to do.

Every two years, as Dennis mentioned, Ohio constructs a biennium state operating budget.

The governor introduces a budget constructed by state agencies, stakeholders, and the administration.

This as introduced budget is sent to the House of Representatives, then onto the Senate, and then to a conference committee to hammer out the differences between the House and Senate versions.

It goes back to the governor who makes the final adjustments and signs our new state budget.

This year, the governor's budget includes funding that would bring pay for our direct support providers and people working in IDD space to more competitive levels of $16 per hour.

These are all averages.

This would help with waiting lists, unfilled positions, and the out of control turnover that our providers are currently experiencing.

I'm thankful Governor DeWine supports our IDD and added budget money to help with our crisis.

I also believe increasing the budget ask by another $145 million of non-federal Ohio dollars and adjusting these wages for people in our space to $18 per hour will be a major factor in improving the quality of life and living in the IDD space.

And I have introduced that as a budget amendment for this current budget.

And I'll know in about two weeks how we've done and I will need help from phone calls from some of you.

Sounds simple, right?

No.

Legislators are inundated with agencies and organizations educating us about true and real needs for immediate funding.

Often we hear about saving lives, not quality of life issues.

It's that severe.

Sadly, it's difficult to attract some legislators to the IDD space.

Our issue's not sexy, giving a legislator a lot of media attention, a lot of interviews or newspaper, and it's not financially attractive.

Campaign donations come from wealthy special interest groups or corporations, not the IDD space.

So we have a little trouble recruiting people in to assist us.

We all know that money's not unlimited and we must operate Ohio with the budget that protects our state and our citizens.

That means difficult decisions will be made and we'll need legislators to prioritize the IDD space.

We need to tell our story.

Citizens living with IDD deserve to be independent and to not have a different caregiver every week.

That means we need to get the message of the Good Life video in front of state representatives and senators.

We need our legislators to ask for this budget increase and to help with the wages, for those that serve, are the people we love and care about.

It will help with workforce issues, which you've heard about tonight, with waiting lines which infuriate me and with the rapid inflation that our provider community is struggling with.

We agree on almost everything.

We agree it will take all of us to politely tell our story and to find the necessary dollars for our friends and families to have a good life.

And I was told I get a bonus credit if I tell you look up ohioiddcrisis.com.

Thanks, Adam.

- Thank you.

You know, Representative Lipps is a great person to be working with at the state level, but there are so many legislators that we can interact with and I think that that's a good message for us to come away with is to remember, we all have a voice.

We may not have lobbyists, we may not have big, deep pockets to feed that fuel that's needed to run political campaigns, but we all have a voice.

Now, I was a little remiss and not telling you upfront that once they got done with their opening statements, you're allowed to ask questions.

And I do have this thing in my ear, so I will be getting some questions from some of the people who are streaming at home and we do have a couple, but I'd like to open it up to the audience and you can certainly direct a question that any one of our panelists or even myself, but we will let them kind of decide where it goes if you have a generic kind of a general question involved.

So if there's anybody would like to start?

Susan?

- [Audience Member] Oh, thank you.

Hi.

Hello?

- It's good.

- Kim?

- Yes ma'am.

- Guardianship first or power of attorney, I was a little confused about that.

- It depends.

It's gonna depend on the situation.

So I like to have a conversation with people when somebody's on the cusp and we kind of evaluate the pros and cons of each.

If the family is comfortable and there is a situation where a power of attorney is an option, I love to start that way when we can and then we can always go to guardianship.

But I've had families start with the reverse, saying, you know, I wanna try guardianship, my child is comfortable with that, we're gonna let it go and just see if with a little bit of added maturity, maybe it's gonna make more sense in a few years to head the power of attorney route.

- I think this kind of dovetails to what you were saying about your brother and the high incidence of Alzheimer's in DS people, because if you have a Down syndrome, you know that that's probably going to happen as they get older.

- Sure.

- And the idea of the parents also being older, which is what my husband and I are, requires you to make a decision about what might happen as we get older and they get older, the DS gets older, and we have three other children who are able and can take care of Shannon if we aren't there.

But I wanna make sure that they don't just, I have to be careful how I say this.

They love her and they will be very inclusive with her.

But I want her handled and cared for properly if she does go into Alzheimer's.

So I was a little confused about, but I can call you.

- [Kim] Yeah, call me.

We can talk about it more.

- Okay.

Thank you so much.

- Sure.

- And I will say that pretty much any one of you can contact us, there will be a number of materials that we will provide you when you leave.

So if you need to get in touch with someone and follow up, please let us know.

- I'm just gonna follow up.

Her question, is Chuck Berry here, Kim, you talk about guardianship, obviously power of attorney and I'm familiar with a term called medical power of attorney.

So maybe you can explain a little bit what those terms mean.

- Sure.

They only gave me five minutes.

So now I get more.

(laughs) - Bonus round.

- Bonus round.

So power of attorney is gonna be a legal document where we're, if I'm executing a power of attorney, I'm giving another person the authority to act on my behalf.

Okay?

I'm signing a legal document so I have to have capacity to do that.

So I have to have somebody that understands that they are entering into a legal document, giving somebody else the authority to do something.

So it's not a super high level of capacity.

I just need to feel comfortable that the person understands what they're signing and they are wanting that relationship.

So there's gonna be a financial power of attorney, that's typically called a general durable power of attorney, and then a medical power of attorney as you asked about, is a document you're gonna sign, same capacity standards, that's gonna give another person the ability to make medical decisions for you, communicate with your doctors, make decisions about going to a nursing home or having different types of treatment or things like that.

Guardianship takes it a step further and we go to that when the person doesn't have the capacity to sign those legal documents, or when they're vulnerable of being taken advantage of, or there's some other kind of issue, because then we've got the court overseeing everything that happens.

So it's more restrictive, but it's more protective as well.

Does that answer your question?

- Yeah, a little bit.

I'm thinking of power of attorney, you know, maybe you when a sibling or son or a daughter would take over for the parent to make decisions, I guess.

'Cause that sometimes happens in a lot of cases.

- Sure.

- When the parents get older and maybe don't want that responsibility.

- [Kim] I think a lot of the time- - It's the same with medical, but then there's cases where, you know, if you have somebody with disabilities that the parent maybe it's passed on or doesn't wanna do that, then I think that's what you're referring to, Kim.

- I think it can work either way and I think if the parent established guardianship then a child or a sibling is likely to continue the guardianship.

If a parent helped the person implement a power of attorney, that power of attorney might list mom or dad as the first choice, but then the siblings as alternates.

So if mom or dad can't serve any more, there is backups named in that power of attorney.

So I think whatever arrangement the parent helps the child get in place could continue on at the next generation.

- Great, thank you.

- Okay, thank you, Kim.

- Thank you.

- [Dennis] We have a question back here.

- Go ahead and talk.

Just go ahead.

- I have a question.

I can say that if... (indistinct) She can't say this about responsible to things that she never... (indistinct) - So you have someone that you're concerned about them having responsibility for decisions?

- [Audience Member] Yes, I am.

- So do you have a guardian then?

- [Audience Member] No.

- So you prefer being able to make decisions on your own?

- [Audience Member] Yeah.

I do.

If they're not... - If they're not, I'm sorry I missed that.

- [Audience Member] They're not entitled to say things like that.

- They're not entitled to speak on your behalf?

- [Audience Member] You're not entitled to speak on my behalf.

- So you wanna be your own best self-advocate?

- Yes.

- Yeah.

And that's one of the things I think we really work hard on at United Rehabilitation Services, we have a self-advocacy program that we work to make sure people do know what their rights are and that they can make decisions on their own with whatever supports they feel are gonna be helpful to them to do that.

And the county board and their SSAs of course do the same thing.

So do we have another question?

Did I see hands popping up?

There's one over here.

- [Audience Member] This is for Dr. Combs, and I believe you said something about... Maybe it wasn't you.

- Dr. Combs is- - No, Kim.

- Okay.

- Kim, I'm sorry.

About aging out of, is it Medicaid at age 65?

- [Dennis] No, that was Dr. Combs talking about.

- [Pamela] That's Medicaid buy-in for workers with disabilities.

- Okay.

All right.

- So that's if they're working and then they have to stop at 65 right now in Ohio.

- [Audience Member] Okay.

I just needed that clarified.

Thank you.

- I would like to add that Dr. Combs is on the issue and very aware of it and we happen to meet prior to tonight's meeting, 20 states have now been able to pierce that, that's a federal law and we're state legislators, so it's hard for us to do federal legislation, but 20 states have found a workaround.

So about an hour and a half ago, Dr. Combs and I formed a partnership and we're gonna be Ohio's workaround.

So... (audience applauds) - Well, I'm not sure who to pose this question to, but I was told someone as interested as what can we do or how can we remove that age limit then?

What can we do to support that process?

- We will let you know after our first meeting.

(people laughing) - Excellent.

- It was daunting, a year ago talking about this issue, it was daunting.

But now we've been able to meet with constituents and start to better understand the issue.

In one of the situations, a Wharton County constituent, they will actually lose enough of their benefit that they will be forced from independent living on their own, into facility.

And I think that's certainly wrong, that we would take someone out of where they wanna be, where they've been their entire life and move them over a law that's not really making any common sense at this point or money for the federal government.

So I do, now that there's a pierce, now that we found a way around it, we are going to certainly dedicate a lot of resources and be able to answer your question.

So come back next year and we'll tell you.

- We'll figure it out.

We have a couple of questions in the center here.

- Hi, I had a question- - Back on, I'm sorry.

- Sorry.

- Oh, I'm sorry.

- [Audience Member] Can I just piggyback then on the same statement that was made about aging out or the 65 buyout, 65?

Is that for an individual that is working in the actual community or is that for an individual that is working in a workshop environment?

- My understanding is that's for competitive employment and that's when they're earning enough that they will lose their insurance or their other resources if they continue to work competitively.

- That was my next question.

- So it's like taking a deduction so you don't cross over that.

- So for example, in Montgomery County, we have a gentleman, when he turned 65, he'd worked his entire adult life, loved his job, and he either had to lose all the money that he earned working, or go into an adult day service all the time instead of working.

So now we're paying to provide services for him instead of him working, earning money and paying taxes.

So it just completely flipped it around.

- [Dennis] Thank you.

For the front row.

- So I had a question with the gentleman at the end here.

So what do you recommend for families transitioning from the person that we are caring for, that we may no longer be able to be their best caregiver?

Do you have any suggestions, recommendations or service, you know, sources?

- Well, once again, it's a matter, you know, one of the things that I've discussed with some of the panel up here and some people in the audience know, when I entered the whole process back in 2010, there's just no roadmap.

I mean you just have no way, and you're kind of out there alone.

Fortunately, my attorneys got me started on the first thing, you know, and just trying to figure out what the next question is?

Who do you ask?

You know, and fortunately being at home during the day, I was able to get on the phone between eight and five with many of these organizations, the state, local and...

Organizations.

And I can't imagine how you do it without having that ability.

If you work a full-time job and you work for an employer, it can take hours waiting for phone calls back and forth.

What you're asking... What I did was I just knew that I needed to get him into, I needed to start looking at viable adult day programs.

And like I said, I visited a number of them, I sat down and I met with them.

I didn't have a specific, I just knew that he needed to be productive.

I didn't want him just sitting around watching TV.

He loved music.

He could have sat and listened to his music all day long.

I wanted him to be productive.

I wanted to give him the best life that I possibly could.

And that's exactly what I do believe that we got.

So I think it's a matter of, you know, you could ask the person what do you want?

But they don't really know.

So sometimes you have to expose them to a variety of things and there might be opportunities where you might be able to allow them to spend a couple of days with that organization.

I don't know if URS has that kind of a situation, you pay for it out of pocket, it used to be about $40 a day, but it might very well be worth testing the waters and seeing, and all these different programs, many of them now are non-profit, some of them are for-profit.

You just need to make sure look at what all they offer, find out what would be interested... And sometimes just like all of us, we might get exposed to something that we never knew that we would enjoy.

And so the person with disabilities might thoroughly enjoy... You know, my brother loved going on all of the trips.

We signed him up for every trip, every activity, because we had enough in, because of my father's social security, that we were able to afford that.

Unfortunately a lot of the people there weren't able to, and I know they've changed the things, but just keep searching, contact the county on your SSA if you have one, and ask them what is out there.

And see, did you guys have a list of... - Yes.

- Okay.

And there you go.

They've got a list of adult day programs and some of them they may only go one or two days a week.

My brother went five days, three of the days were paid for through SSI and two days were paid through the county human services levy.

And so he was able to go five days a week.

So that was, you know, that was a real help.

Is the person, I'm assuming, you know, have you made plans for a group home or anything with the individual?

- Yes, but we're, you know, he's only 18, so I'm... You know, I'm just a fatalist.

I just know I'm gonna die before him, you know, I mean that's just, you know what I mean, I mean realistically, he will outlive me, and that is the way it should be.

That is, you know, my job is to make him as independent and thrive without me- - Absolutely.

- As much as I can.

And as much as I hate saying that, that is my job as a parent, no matter what ability or capability my child may have.

And a question I wanted to piggyback on you is when you wanted to talk to your mother about transferring care from her to you, what do you wish would've happened?

You know, what should I do for my other children, so when I am no longer capable of making good decisions or caring for my son, that my children can help, you know, their sibling?

- Well, you need to start talking to your other children now and find out what they're open to.

I've got some friends whose son, a long time ago we had dinner and I said, did you get him signed up for a group home?

Yeah, we've finally gone on the list.

My mom never signed my brother up for a group home.

When I went onto the list in 2010, I was over 1,025 on the list.

I dropped down to like 625.

So that was a challenge.

And then I was told, because the county changed the, some of the, when I was gonna turn 60, I no longer moved to the top of the list.

But what happened, I've told people, start planning, these friends of mine said, oh, the kids, they love their brothers so much, they'll take care of 'em.

One of the sons ended up graduating from Ohio State and now lives in California.

And those siblings may end up marrying a spouse that does not want to be dealing with someone with disabilities.

You can't, I always say, you can't paint the picture the way you want it to look, 'cause chances are it's not gonna be a Monet when it's all said and done.

It's gonna look a lot different.

So make sure, you know, make the plans now, if that person's on a list for a group home, that can be very one of the, in my recommendation, that would be the best thing you could do.

And even getting him into a group home, him or her, into a group home, even while you're surviving, don't wait until you're getting too old.

- Thank you.

- Great, thank you.

And I will just remind everybody that we're kind of winding down.

We only have time for a couple more questions, so if we could kind of... - I just have a quick comment.

- Yeah.

- And then a question for Dr. Combs.

My daughter, Shannon, has been in the Montgomery County program for several years in a day program in Centerville.

And then on Fridays, she goes three days a week, four days a week to that, and then on Fridays to the Fun Fit program.

Best thing ever for her, she gets exercise, she's with people like herself, she gets out, she does things.

Another point, SSAs are the best thing a parent can do for themselves and their child.

Get a good one.

We've got a good one.

You've got some great SSAs, you have great employees, but you do have a crisis in getting them.

Every day, once a week Shannon comes home and she gets off the van and she says, well, but another one quit.

So it is a crisis.

My question, can you talk to me about life insurance for Shannon and Medicaid?

Do they touch each other when it's time to bury her?

If I'm still around or if my son, who will probably be her legal guardian, is around?

Thank you very much for all you do, all of you, but especially you.

- Aw, thank you so much and thank you for getting in, and I appreciate it.

So what you just asked is really something that you should speak with your wonderful SSA about, but generally speaking, life insurance for burial will not be impacted by Medicaid or will not be pulled back by Medicaid.

- But you've gotta make special arrangements.

- Yeah, you have to make special arrangements, but typically if it's for burial.

- Okay, yeah, there's, I don't think it's working.

- And Kim has the full presentation coming up.

(Pamela laughing) - Actually I, yes.

Just a plug.

Is this working?

No, I'm doing another free presentation Thursday night at the Oakwood Library.

It's all on special needs planning.

It's at seven o'clock, so if anybody wants the full hour, I'll be there.

No registration required.

- And we can stay for questions afterwards.

We got a couple right here in the middle.

Got the mic.

- I just wanted to go back to the age 65 limitations.

They're working at the state level to change that, but what's being done at the federal level to change that?

- That's what we're going to look at what the other states did and to see what they were able to do.

- [Audience Member] But why can't it be done at the top level so each state does not have to fight this?

I can't answer that- - Call your congressman.

- Congressman Turner's representative is here in the back.

(laughs) - [Audience Member] I just wondered if something was in the works.

- Well, there... And I know we need to wrap up in just a few minutes.

I will say there is a lot going on at the federal level that we all need to be in tune with.

Actually in President Biden's most recent budget proposal, he's included an extra $150 billion to support Medicaid.

So that will increase waiver funding for each of the states and hopefully get rid of a waiting list.

We have 451,000 people in this country that are on waiting lists for services.

Now, some of that has to do with that workforce crisis.

We have had classrooms closed at United Rehabilitation Services for months because we can't find staff.

And I think to Dr. Combs' point earlier, what we need to do is value the people who provide this kind of direct care and support them and pay them a living wage.

- Exactly.

- Because if we're paying less than $20 an hour, they're on Medicaid themselves and we are not supporting them in a level that's necessary.

We need to create this as a career path for people to follow that path and follow their hearts and their passion who can't afford to do it.

I try to recruit and I can put up a billboard outside of my office and I can run ads all I want.

But when Chewy's and Procter & Gamble, and even Wendy's are paying more than I can afford to pay, because we're limited in terms of what our revenue is based upon what the state biennium budget is.

So as kind of a wrap up, and I think you've heard it a couple of times, there are incredibly important issues out there right now at the local, state and at the federal level.

We need to make ourselves aware.

And that's, excuse me, that's why it's so important that we have a vehicle like this, a mechanism for us to share this information with you all and the people out in the community and carry this message forward.

Be informed, stay informed, and get involved.

You know?

I have found by meeting Representative Lipps, by working with all the legislators in our area, and a number of them wanted to be here.

They are very busy in Columbus.

And Representative Lipps was kind enough to drive back and forth so he could be a part of this tonight.

Your legislators will listen to you.

This is your chance to speak up and speak on behalf of the people who may not have a voice.

Excuse me.

So please take advantage of that and follow up with us.

Find ways of learning about this.

Through the county board, through the legislature, you can learn a lot.

So we ask you to please get engaged and make a difference.

One more question?

You got... - I just wonder, Kim, the word legal has been kind of talked about, about how much does this process cost?

I know it's gonna be from here to here depending, but, you know, a ballpark number.

- I would say it's a range probably from 1,500 to 3,500 would be a good ballpark.

But it's gonna depend if you're just doing wills and powers of attorney or if you're incorporating a trust.

But somewhere in that range would probably be a good estimate.

- Thank you.

- Well, bear in mind that if you look at the latest census, more than one in four people in our country have a disability, some type of developmental delay or disability.

And what they've said is is that the number of people with disabilities over the age of 60 is expected to triple by 2030.

And we need to take action now.

So...

Excuse me.

So thank you to Think TV, WCET for being a part of this and involving us.

I wanna thank all of you for being here.

I wanna thank the C. D. Berry Foundation for supporting this specific event and allowing us to make a difference.

Thank you.

(audience applauding)